WHEN MY DAD DIED: A RELATIVE'S PERSPECTIVE
Richard West

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This article is about what happened to me when my dad was dying and when he died.

My name is Richard West. I work with the Department of Health in London on Valuing People to make sure that people with intellectual disabilities have rights, choice and independence. I also help the Department of Transport to get transport working better for people with intellectual and physical disabilities.

I live in my own flat supported by an outreach team. I get help when I ask them.

This is about what I went through when my dad died. I am hoping that it will help others who may go through the same thing as I have.

My dad died in December 1999. He died in a hospital in North West London. He died from cancer. He had been sick for about ten months and had been having treatment in hospital.

My sister wrote to me because I am not able to use telephones, because I am also deaf. She wrote to tell me that our dad was in hospital. I was able to visit him before he died. I used to visit him on my own.

This was very hard because I didn't know about cancer and what it does to people. No-one in the hospital told me what was happening to him. I didn't know that he was going to die. I thought he was going to get better. I only knew he was going to die just before he died because I could see that he was very weak. He wasn't eating or drinking. No-one in my family told me that he was going to die either.

The last time I went to the hospital to visit him, he wasn't there. I didn't know where he was. I asked a nurse what happened to him. She took me to a private room and told me that he had died. She didn't tell me anything else and I was too upset to ask her any questions.

My dad had died the same day.

The nurse didn't tell me that I could have seen my dad after he died. I didn't get to say goodbye to my dad.

The nurse didn't tell me where they had taken his body.

She didn't tell me that there was a chaplain that I could talk to.

She didn't tell me that there was a quiet place that I could go to.

She didn't tell me about these people that you can talk to when a person dies.

It would have been better if she had told me about these things. It would have been better if everything was written down in an easy way so that I could have looked at it later.

The rest of the family organised my dad's funeral. They didn't ask me what I wanted.

I didn't want to go to the funeral because I was too upset. One of my neighbours, Laura, talked to me for hours, telling me that it would be good for me to go to the funeral. Laura also has intellectual disability. If it wasn't for her I wouldn't have gone. She helped me to decide what to wear for the funeral. She was more supportive than many other people.

I was too upset to talk to the outreach team and too angry to talk to Social Services or health. I didn't have a care manager that I could contact myself. I didn't really know who to talk to. Laura was the only one who was there.

I think that it would be better if the health people had talked to me about cancer and radiotherapy and chemotherapy. I think it would have been easier for me to understand what was happening to my dad.

A few weeks after the funeral, I wanted to talk to someone about how I felt about my dad's death. I spoke with a member of the outreach team and asked them to get in touch with someone from social services. I was able to talk to a care manager about how I was feeling.

I didn't know that there are special people that you can talk to about death and dying. The care manager didn't tell me about these special counsellors.

I think that it would be better if care managers tell people about these counsellors. I think that people with learning disabilities should be given accessible information about death and dying. We should be told that it is OK to talk to people about death and dying and feelings.

I don't know if there is a special group for people with intellectual disabilities who have family members who have cancer or died from cancer. This group could help people to talk to each other about what has happened and how to make it better for them and for other people. Having a group like this would help us to talk about how we feel and to understand what cancer can do and what has happened.

My friend Laura talked to me about when her dad died. Her dad died in an accident at work. She helped me to think about my dad, the good things about him. This was very helpful to me. Because she is also a neighbour, she made sure that I was alright at all hours of the day. She was my main support during this difficult time.

I want to end with these messages:

• People with intellectual disabilities should be given the same information about death and dying that other people are given.
• Information needs to be accessible, using pictures, photographs, easy words and/or video.
• This information should be given to us by everyone who works with people with intellectual disabilities for example, health, social services, voluntary people, family, etc.
• It would be good to plan and work with people with intellectual disabilities who have cancer and talk about how services can make their needs better
• People with intellectual disabilities need support when going through something like this - support can come from family and friends as well as people who work with us.

Sheila Hollins writes: Richard's experience was one that is still, alas, shared by many. It should never be allowed to happen. When he told me about his experience, I gave him a copy of the Books Beyond Words title, When Dad Died. He wished someone had given it to him at the time of his father's death. People with intellectual disabilities have a right to participate fully in the grief and mourning process. Bereavement support and counselling should be made available routinely and not just when a maladaptive reaction has been recognised as grief. Both individual and group work with bereaved individuals may be helpful, particular if nonverbal approaches, such as the use of counselling picture books, are available. Hospital staff often don't know about easier-to-understand sources of information. It may be down to family members and direct support staff to be better informed and able to advocate for the person so that their emotional and information needs are understood and met. The best tools to use directly with people with intellectual disabilities are three picture books published in Books Beyond Words: When Somebody Dies (2003), When Dad Died (as mentioned above) and When Mum Died (2004). The two latter titles are now available in a third edition, which includes new text and guidelines (see www.rcpsych.ac.uk/publications/bbw). For background information, counsellors are recommended to read Am I Allowed to Cry? A Study of Bereavement amongst People who have Learning Difficulties (1991) by Maureen Oswin. £12.99. Souvenir Press, London, and Loss and Learning Disabilities (2003) by Noelle Blackman. £16.99. Worth Publishing, London.

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